Welcome to Leukodystrophy Australia

Leukodystrophy Australia helps those living with leukodystrophy, through knowledge and support, to lead their best lives.

Meet Our Medical and Research Advisor

The services provided by Leukodystrophy Australia are crucial to supporting individuals affected by leukodystrophy… Leukodystrophy Australia is committed to providing a sustainable support service that can grow and evolve as needed to meet the substantial and changing needs of this patient group.

Dr Chloe Stutterd – Clinical Geneticist – Victorian Clinical Genetics Service

COVID-19 Resources

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Charity Challenge Golf Days

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Welcome to Leukodystrophy Australia

Supporting individuals & families impacted by Leukodystrophy

People diagnosed with Leukodystrophy, their families and carers, are on a life-long journey of largely the unknown.  In the main, there is no treatment or cure, diagnosis can be problematic and protracted, misdiagnosis happens.  Devastation for families is long, huge, and life changing. 

Recognition and funding into genomics, has seen numbers of our new contacts double in the past 6 months compared to the previous 12 months. 

We support our members, nationally, urban, rural and regional, with empowerment throughout their Leukodystrophy journey, from pre diagnosis and beyond. We offer support by fostering member connections, providing service linkages, education, advocacy, crisis support, promoting current trends in treatments and research. 

Our holistic approach improves well-being of the diagnosed person, families and carers, by empowering their decision making in life and health, across multiple stakeholders.  Friendship opportunities, majorly, and importantly, reduces the often overwhelming sense of isolation and anguish.  Leukodystrophy Australia offers time, comfort, practical support.

Vision & Mission

Vision

Those living with leukodystrophy, through knowledge and support, lead their best lives.

Mission

We assist in empowering people throughout their Leukodystrophy journey and beyond. We offer support, foster member connections, provide service linkages, education, advocacy and promote current trends in treatments and research.

Leukodystrophy Australia is delighted to partner Humaniti, Australia’s first budgeting app where you can earn money doing surveys.

This is a great opportunity for you and your broader network to access a simple and helpful tool, earn some extra $$, and be able to raise much needed money for our families. 

Ben Dixon, the founder of Humaniti, has been associated with Leukodystrophy and the Charity Challenge events for over 15 years, and is very excited to be able to support us in this way. 

For every member who joins Humaniti and puts in the referral code LEUKO10, Humaniti will donate $10.00 to Leukodystrophy Australia. You also get $5.00 to kickstart your Humaniti account.

Please join Humaniti at www.humaniti.com or your App Store

Support the efforts of Leukodystrophy Australia

Leukodystrophy Australia is the national peak organisation representing all people impacted by Leukodystrophy. We share in the same vision to source a cure for Leukodystrophy worldwide. We collaborate internally and externally with numerous stakeholders to advance the care of our members.

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